14th September 2023 :
World Skin Health Day, organised by the French Society of Dermatology (SFD).
The first part of the day was dedicated to Skin Disability and Marie-Claude Boiteux testified during the round table on this subject.
Pr Marie BEYLOT-BARRY presented with the impact of dermatological disorders on quality of life
It also was the occasion of an interview for the SFD.
in its summer 2023 issue, Rare Revolution Magazine
published an article about Dave Jacob
Have a read
A new article has been published in the Keio Journal of Medicine providing an overview of recent advances in clinical research on rare hereditary skin diseases in Japan.
It shows efforts to uncover their pathogeneses, potential new treatment methods, current progress on establishing clinical practice guidelines and activities which have been undertaken to raise public awareness.
Collecting scientific evidence also aims to inform the creation and revision of evidence-based Clinical Practice Guidelines. (orphanews international 2023.07.26)
In its June 2023 issue,
ERN-Skin eNews mentionned ePAG Advocates
attending Globalskin meeting “Elevate”
and those who were honoured with an award.
Have a read
If you are a dermatology patient THIS IS VERY IMPORTANT
You are invited to take the GRIDD Survey now and share it with anyone who can take part!
On June 5, 2023, GlobalSkin, in collaboration with Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany), launched the Global Research on the Impact of Dermatological Diseases (GRIDD) Study.
Launched with the aim of engaging 10,000 participants, the GRIDD Study takes 10-20 minutes to complete and is accessible in 17 languages.
The data collected will help to validate the need for improved care, better treatment options, and more affordable medicine for dermatology patients globally.
The GRIDD Study is open until September 28, 2023.
25th November 2022 : The Triathlon of Sireuil presented CLI with a cheque
24th January 2023 : Workgroup on recognising the value of the work done by volunteers
02nd February 2023 : Working on the French Local Projects for Health
14th February 2023 : Eurordis Black Pearl Awards
9th June 2023 : European Workgroup on Pregnancy and Family Planning
22nd June 2023 : BMS SpotInfoPatients “From Patients’rights to how Patients can commit in the Health system”
26th June 2023 : Eurordis Webinar : Patient Partnership Framework in ERNs
:
The “Patient Journey” seeks to identify the needs that are
specific to individual syndromes. To achieve this, patient
representatives completed a mapping exercise of the needs
of each rare inherited syndrome they represent, across the
different stages of the Patient Journey.
This is the definition of the Patient Journey as mentioned in this article published in 2019.
This is an important work and we established the Cutis Laxa “Patient Journey”.
Cutis Laxa being such a complex disorder, with several subtypes and various associated symptoms, we could not have just one Cutis Laxa “Patient Journey”. We gathered together associated symptoms of the different subtypes and ended with two groups of subtypes.
Here are the results for the two “Patient Journeys” for Cutis Laxa patients:
It is with deep sorrow that we learned that Chiara, in Italy, and Dave, in UK, passed away.
For both of them, lung issues due to Cutis Laxa got the better of their energy and will to fight. Chiara was supposed to attend the Days in Ghent and Dave had attended the Days in Annecy. We send their families our thoughts and condolences, as well as lots of courage to face this hard time.
Twice a month, the French Federation for Skin publishes (in French) an new article on global issue of skin and dermatology.
Go and Have a look from time to time